Chapter 3: Cochlear Implants & Culture Wars, Part III

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The months before surgery
There was a lot we had to do to get ready for Grace's CI surgery, which was scheduled for March, 2003. She would be eleven months old.

Choosing a CI

Jason was the one who figured out the best way to choose the right CI manufacturer for Grace. There are two manufacturers of cochlear implants that were available to us at the time in the US – Advanced Bionics and Cochlear, (a third company, Med El, was not readily available in the states). As the date of Grace’s implant began to inch closer, we needed to make a decision about which manufacturer we were going to select. We tried to get as much information as we could from our audiologist, Jill, at the Listening Center, but she was impeccably diplomatic, and was no help at all. “Some parents like one, some like the other”, she said. We asked if there was any evidence that one brand was more likely to fail? “No studies show that.” We asked if there had been any research examining whether kids do better with one device versus the other? “No.”

Jason and I both have backgrounds as researchers, but after spending a little time on the Internet, I felt utterly unable to gather the type of useful information I needed to make a decision. Jason, on the other hand, devised a solid and useful approach. He created a chart that included the different features of both the AB and the Cochlear devices. He looked at outer hardware, inner hardware, accessories, upgradeability, any instances he found published on device failure, rates of meningitis by brand, cosmetic appeal, etc.. Ultimately, he came to the conclusion that Advanced Bionics’ emphasis seemed to be toward form, versus Cochlear’s lean toward function. There had been a few recent cases of meningitis among implantees; these had universally been among AB recipients. He entered that into the chart.

One of the reasons I believe parents tended to choose AB over Cochlear is that, at that time, AB’s microphone was built into the headpiece receiver, while Cochlear’s microphone had a separate component that sat over the ear. For those of us who experienced first-hand life with a child with hearing aids, the idea that there wouldn’t actually be any equipment on the ear itself was very appealing. But Jason rightly pointed out that for AB users, this meant that the microphone itself was located well behind the ear, at the back of the head. Which, generally, is not facing the most important source of sound: the human speaker. The Cochlear microphone, situated strategically on the ear, picked up sound coming from in front of the user. That seemed to make a lot more sense. Though we believed that perhaps ultimately, either decision we made would be fine, we were inclined to go with the Cochlear manufacturer. As time has gone on, we have never once regretted this decision, and have had several occasions to be very impressed by Jason’s reasoning.

MRI

All this time, while the date of Grace’s surgery came nearer, she was thriving. In addition to her EEG, Grace needed to have an MRI so that they could see the internal structure of the areas where they’d be doing the surgery. That was a scary day. Grace needed to be sedated in order to do the MRI. She was a terrific little patient the whole morning during the drawn out pre-op. But seeing her tiny body, so deep in sleep, being wheeled to the MRI on the gurney, was pretty disconcerting. We watched the imaging process through a window in an adjoining waiting area; Jason even went into the small room where they were controlling the machine and taking the images, so he could learn how the process works. We left Children’s Hospital with a picture of Grace’s skull which we brought to her surgeon at Hopkins, Dr. Francis, a week or two later. He assured us the MRI showed that she had “very favorable anatomy”. This was her first MRI, and will likely have been her last. Because of the magnet now implanted inside Grace’s head, she will never have the option of having an MRI again, unless they first do a procedure to remove the magnet.

Tear Ducts

From the time that Grace was born, she had blocked tear ducts. Her eyes, first blue, then a remarkable, almost startling blue-green – like Jason’s and my mother in law’s– were consistently full of goo. They were red-rimmed most of the time, and watery. It was particularly bad whenever she had a cold, but it was bad most of the time. The pediatrician recommended massaging around them. My cousin said her husband’s family, who is Portuguese, told her to put cool, wet teabags on Grace’s eyes. A friend of Egyptian descent said the same. Nothing worked. Every morning Grace woke up with her eyes caked shut by greenish-yellow goo. I had to unstick them by rubbing them gently with a warm wet washcloth. And every day, at least six people said to her “Aw, why were you crying?” or “Um, does she have pink eye?” and I got really, really tired of explaining that she was in fact a very happy, non-contagious baby, who just had blocked tear ducts.

Dr. Dana said the ducts would probably clear, on their own, by the time Grace was six months old. At six months, she said maybe at eight or ten months. Finally, wanting to have her in tip-top shape before her big CI surgery, we decided to go ahead and try a more aggressive approach. We scheduled a minor procedure with the pediatric opthamologist to have the tear duct blockage taken care of by a supposedly painless “probe” at an outpatient surgical center, when Grace was 10 months old. It was only supposed to take a few minutes, and Grace was not supposed to awake with any discomfort. It was her second time heading into sedation. I wasn’t exactly relaxed about it, but I did my best to seem so.

We got to the surgical center early, Grace, Jason, and I. It was completely packed with people. While we waited for our turn, Grace walked around the waiting area – she was a very early walker, like her dad - entertaining the several dozen people crammed in there. There happened to be a deaf family at the center that day, and I signed with them about Grace as she teetered around the room, and they smiled at her as everyone else did – her hearing aids causing periodic feedback which of course she never noticed. I felt proud I was able to sign with them, even a little, though I don’t recall whether I mentioned her upcoming implant surgery.

The mini-surgery went off without a hitch and happened very quickly once Grace was wheeled in. I asked Jason to be the one to go into the prep room with her, where they would administer the twilight drugs to make her sleep during the procedure – I couldn’t watch her go under like that. When she came out, less than 20 minutes after she’d gone in, and swam out of the drug-induced sleep, she was panicky and hysterical. It took her longer to calm down than the entire procedure in the OR had taken. As I held her, I remember thinking we were in for a tough day, come CI surgery, if this was how she responded to anesthesia.

Pre-approval for insurance

The cost of cochlear implant surgery, plus the cost of the equipment, is prohibitive- tens of thousands of dollars. Once the equipment is purchased and the surgery done, there continues to be the ongoing, significant cost of rehabilitation services (ie., speech and language therapy). Still, we were reassured by consistent reports from the implant center at Hopkins that insurance would in fact likely cover the lion’s share of the cost.

In order to get the cost pre-approved, we needed to submit to the insurance company a letter of medical necessity. This included attachments from the team of professionals who had seen Grace: The audiologists’ reports and audiograms stating that she was profoundly deaf, and that hearing aids offered her little or no benefit. In addition, we needed letters from the doctors themselves stating that in order to live a life in which Grace could participate in the broad community and reach her cognitive, social, and linguistic potential, this cochlear implant procedure was “medically necessary.” We drafted the letter, re-worked it, showed it to the administrative support team at Hopkins, attached the letters, and sent it off. It took a while to collect it all, but we were informed by Hopkins before the date of the surgery that it had been pre-approved. We ordered Grace a body-worn Nucleus device from Cochlear, the most up-to-date model at the time, and had it sent to the implant team at the Listening Center. We had the green light.